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Consequences for caregivers of patients with severe mental illness: the development
of the invovement evaluation questionnaire
van Wijngaarden, B.
Link to publication
Citation for published version (APA):
van Wijngaarden, B. (2003). Consequences for caregivers of patients with severe mental illness: the
development of the invovement evaluation questionnaire
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Download date: 16 Jun 2017
Appendixx II: final IEQ-EU version
(usedd in the studies described in Chapters 2, 3, 4, and 6)
Respondentt identifier
IEQ-EU U
Involvement t
Evaluation n
Questionnaire e
Europeann Version
©19922 AH Schene&B van Wijngaarden
©19977 B van Wijngaarden & AH Schene
173 3
Finall IEQ-EU version
INVOLVEMENTT EVALUATION QUESTIONNAIRE
Introduction n
Inn the field of psychiatric care, attention has been concentrated almost
exclusivelyy on the patients themselves. In recent years, however, more concern
hass been shown towards the families, friends and others involved.
Youu too are involved in the care of someone with mental health problems and
thiss questionnaire has been designed to assess the personal consequences of
suchh a situation for carers like yourself.
Completingg the questionnaire
Thee questionnaire is divided into 8 sections, each representing a different
aspectt of caring. Each part is headed by a brief explanatory paragraph to lead
youu into the theme of the section.
Onlyy one answer is possible for each question, unless otherwise indicated pleasee tick accordingly In some cases, we will ask you to fill in a few personal
details,, such as your age.
Itt is quite possible that in some cases, a question will not be relevant to your
particularr circumstances. The questionnaire will clearly indicate, therefor, which
questionss you can ignore and at which point you should start again.
Thee consequences of your caring for someone who has mental health
problemss might have existed for several years already, but it is important to
bearr in mind that this questionnaire is mostly concerned with an analysis of the
currentcurrent situation. Most of the questions, therefor, cover your experiences during
thee past four weeks, whilst a few questions are about your more long-term
experience.. The questions themselves will make this clear
Alll information will be treated confidentially, and you do not have to give your
namee if you do not wish to. If there are questions which you would prefer not to
answer,, we will, of course, respect your wishes - in this case, however, please
writee 'no answer' next to the question.
Takee your time to answer each question in turn and remember that what
matterss most of all is that your answers truly reflect your own personal
experience. .
174 4
Appendixx II
Today'ss date:
19
Beforee we turn to the matter of your own experiences, we would first like to have
somee general information about you personally and about the relative/friend you are
caringg for.
WhatWhat is your age7
II am
years of age.
SexSex ?
female
male
YourYour education/training 7
WhatWhat is your civil status9
II am :
single
married/in a long-term partnership
divorced
widowed
DoDo you live alone or with others7
DD
DD
nn
nn
livee alone
(PROCEED TO QUESTION 7)
livee with my spouse/partner and/or children
livee with my parents and/or sisters/brothers
livee with other relatives
livee with friends
otherr (please indicate)
HowHow many people, including yourself, are there in your household7
Myy household consists of
(no ] people
WhatWhat is your relative/friend's age7
Myy relative/friend is
years of age
175 5
Finall IEQ-EU version
8..
My relative/friend's sex is:
[^^
[Jjj
9..
female
male
When did your relative/friend's mentai health problems start?
Thatt was in 19
10..
Is your relative/friend currently receiving help for his/her mental health problems?
PleasePlease note thai more than one answer is possible.
[/JJ
fjjj
[~JJ
[ jj
11..
I do not know
no professional help
yes, from G.P./family doctor
yes, from a social worker
yes, from an occupational therapist
yes, at the Community Mental Health Centre/from the Community Mental Health
Team m
yes, from a psychologist or cognitive/behavioural therapist
yes, as an outpatient at a psychiatric hospital or the psychiatric department of a
generall hospital
yes, in a psychiatric day hospital
yes, as an inpatient in a psychiatric hospital or the psychiatric department of a
generall hospital
yes, living in supported housing
yes, other (please specify)
What is your precise relationship with your
nn
DD
nn
nn
nn
r~ ~
ii
nn
relative/friend9
mother/fatherr (step, foster and adoptive parents included)
daughter/son n
sister/brother r
otherr relative
wife/husband,, partner or girl/boy friend
friend d
neighbour r
colleague/felloww student
pp
122 -
Is your relative/friend part of your household?
HH
no
PP
yes
176 6
Appendixx II
HowHow many days have you and your relative/friend lived together at the same address
duringduring the past four weeks7
none
some, namely
the full four weeks
(no.I days
WhatWhat is your family's approximate net income (wage/salary welfare benefits, pension
etc.etc. I after deductions for tax, national insurance etc. ?
less than £300 per month
£300 - £500 per month
£500 - £900 per month
£900 - £1500 per month
£1500 - £2250 per month
more than £2250 per month
WhatWhat has been your average weekly telephone or personal contact with your relative/
friend,friend, over the past four weeks7
nn
less than 1 hour a week (PROCEED TO QUESTION 37)
1-4 hours a week
5-8 hours a week
9-16 hours a week
17-32 hours a week
more than 32 hours a week
Thee following questions are about the encouragement and care you have given to
yourr relative/friend during the past four weeks.
HowHow often during the past four weeks have you encouraged your relative/friend to take
properproper care of her/himself leg. washing, bathing, brushing teeth, dressing, combing
hairhair etc.)7
never
sometimes
regularly
often
(almost) always
177 7
Finall IEQ-EU version
17..
How often during the post four weeks have you helped your relative/friend take proper
carecare of her/himself (e.g. washing, bathing, brushing teeth, dressing, combing hair
etc.)? etc.)?
aa
18..
never r
sometimes s
regularly y
often n
(almost]] always
How often during the past four weeks have you encouraged your relative/friend to eat
enoughenough9 9
never
sometimes
regularly
often
(almost) always
19..
How often during the past four weeks have you encouraged your relative/friend to
undertakeundertake some kind of activity (e.g. go for a walk, have a chat, hobbies, household
chores}chores}9 9
never
[~JJ
20..
How often during the past four weeks have you accompanied your relative/friend on
somesome kind of outside activity because he/she did not dare to go alone?
LL
MM
21..
sometimes
regularly
often
(almost) always
never
sometimes
regularly
often
(almost) always
How often during the past four weeks have you ensured that your relative/friend
takentaken the required medicine9
not relevant: relative/friend has no medicines
never
rnn
HH
sometimes
regularly
often
(almost) always
178 8
has
Appendixx II
222
How often during the past four weeks have you guarded your relotive/friend from
committingcommitting dangerous acts lie. setting something alight, leaving the gas on, forgetting
toto stub cigarettes out etc.)?
LJJ
23..
never
sometimes
regularly
often
(almost) always
How often during the past four weeks have you guarded your relative/friend from selfinflictedinflicted harm (i.e. cutting her/himself, excessive medicine intake, burning, suicide
attemptattempt etc.)?
never
sometimes
regularly
often
(almost) always
244
How often during the past four weeks have you ensured that your relative/friend
receivedreceived sufficient sleep7
DD
25,,
never
sometimes
regularly
often
(almost) always
How often during the past four weeks have you guarded your relative/friend from
drinkingdrinking too much alcohol7
never
sometimes
regularly
often
(almost) always
26..
How often during the past four weeks have you guarded your relative/friend from
takingtaking illegal drugs7
never
sometimes
regularly
often
(almost) always
179 9
Finall IEQ-EU version
27..
How often during the past four weeks hove you carried out tasks normally done by your
relative/friendrelative/friend (household chores, financial matters, shopping, cooking etc.j7
never
sometimes
regularly
often
(almost) always
28..
How often during the past four weeks have you encouraged your relative/friend to get
upup in the morning7
never
sometimes
regularly
often
(almost) always
29..
How often during the past four weeks has your relative/friend disturbed your sleep7
never
sometimes
regularly
often
(almost) always
Thee following questions are about how you have got on with your relative/friend in the
pastt four weeks.
30..
How often during the past four weeks has the atmosphere been strained between you
both,both, as a result of your relative/friend's behaviour7
never
sometimes
regularly
often
(almost) always
31..
How often during the past four weeks has your relative/friend caused a guarrel7
never
sometimes
regularly
often
[almost) always
180 0
Appendixx II
32..
How often during the past four weeks have you been annoyed by your relative/ friend's
behaviourbehaviour7 7
never
sometimes
regularly
often
(almost) always
33..
How often during the past four weeks have you heard from others that they have been
annoyedannoyed by your relative/friend's behaviour7
F]]
34..
never
sometimes
regularly
often
(almost) always
How often during the past four weeks have you felt threatened by your relative/ friend?
never
sometimes
regularly
often
(almost) always
35..
How often during the past four weeks have you thought of moving out as a result of
youryour relative/friend's behaviour7
never
sometimes
regularly
often
(almost) always
36..
How often during the past four weeks have you been able to pursue your own activities
andand interests (e.g. work, school, hobbies, sports, visits to family and friends!7
never
sometimes
regularly
often
(almost) always
181 1
Finall IEQ-EU version
Thee following questions are about the worries which may arise from your involvement
withh a relative/friend who has mental health problems.
37..
How often during the past four weeks have you worried about your relative/friend's
safety^ safety^
GG
GG
55
aa
38..
never r
sometimes s
regularly y
often n
(almost)) always
How often during the past four weeks have you worried about the kind of help/
treatmenttreatment your relative/friend is receiving7
never
sometimes
regularly
often
(almost) always
39..
How often during the past four weeks have you worried about your relative/friend's
generalgeneral health7
never
sometimes
regularly
often
(almost) always
40..
How often during the past four weeks have you worried about how your relative/ friend
wouldwould manage financially if you were no longer able to help7
GG
GG
aa
41..
never r
sometimes s
regularly y
often n
(almost)) always
How often during the past four weeks have you worried about your relative/friend's
futurefuture7 7
never
sometimes
regularly
often
(almost) always
182 2
Appendixx II
42..
How often during the past four weeks have you worried about your own future7
never
sometimes
regularly
often
(almost) always
433
To what extent have your relative/friend's mental health problems been a burden to
youyou during the past four weeks9
[HH
QQ
44..
Have you got used to your relative/friend having mental health problems7
DD
45..
no burden at all
a slight burden
a fairly heavy burden
a heavy burden
a very heavy burden
no
a little
fairly well
very well
completely
How often have you felt able to cope with your relative/friend's mental health
problems? problems?
never
sometimes
regularly
often
[almost) always
46..
Has your relationship with your relative/friend changed since the onset of the mental
healthhealth problems?
no
a little
rather a lot
a lot
a great deal
183 3
Finall IEQ-EU version
Thee following questions are about the financial cost to you and your household, as a
resultt of your relative/friend's mental health problems.
HaveHave you, during the post four weeks, hod to incur extra expenses on behalf of your
relative/friendrelative/friend7 7
yes s
no o
47..
Professional help for your relative/friend
DD
48..
Damage caused by your relative/friend
DD
DD
49..
Large expenditures incurred by your relative/friend
DD
DD
50..
Relative/friend's travel expenses
aa
51..
Medicine for your relafive/friend
DD
DD
52..
Paying off debts incurred by your relative/friend
DD
DD
53..
Other expenses (please indicate):
54..
If you add up oil the extra expenses which you have incurred on behalf of your relative/
friendfriend during the past four weeks, what is the estimated total figure9
less than £25
£25-£50
£50-£125
£125-£250
more than £250
184 4
Appendixx II
Pleasee read the questions below and each of the four possible answers. We want to
knoww how your health has been in general over the last four weeks. Please answer all
thee questions by circling the response that best applies to you.
HaveHave you recently:
55. .
55 6.
same as
beenbeen able to concentrate on what you're betterr
thann usual usual
doing? doing?
nott at all
lost m uch sleep o ver worry
lesss than
usuall
much less
than usual
no more
rather
much
thann usual morethan morethan
usuall
usual
57..
felt that you are playing a useful part in
things? things?
moree so
same as
thann usual usual
less so
much less
than usual than usual
58..
felt capable of making
things? things?
moree so
same as
thann usual usual
less so
much less
than usual capable
59..
felt constantly under strain 7
nott at all
noo more
rather
much
thann usual morethan morethan
usuall
usual
60..
felt you couldn't overcome your difficulties?
not at all
noo more
rather
much
thann usual morethan morethan
usuall
usual
61..
been able to enjoy your normal
activitiesactivities7 7
moree so
same as
thann usual usual
less so
much less
than usual than usual
62..
been able to face up to your problems?
moree so
same as
thann usual usual
less able much less
than usual able
63..
been feeling unhappy or depressed7
nott at all
no more
rather
much
thann usual morethan morethan
usuall
usual
64..
been losing confidence in yourself7
nott at all
no more
rather
much
thann usual morethan morethan
usuall
usual
65..
been thinking of yourself as a worthless
personperson7 7
nott at alt
no more
rather
much
thann usual morethan morethan
usuall
usual
66,,
been feeling reasonably happy, all things
consideredconsidered7 7
moree so
same as
thann usual usual
decisions
about
day-to-day
©© 1978 David Goldberg
185 5
less so
much less
than usual than usual
Finall IEQ-EU version
67..
Are you receiving help from your G.P./family doctor for any of these complaints9
yes
DD
68..
no
Are you receiving help from a social worker, a psychologist, a psychiatrist or an
outpatientoutpatient department for any of these complaints7
yes
DD
69..
no
Are you taking any kind of medicine for these complaints9
DD
DD
yes
no
Iff a father or mother has mental health problems, this may have consequences for
theirr children, if any. The following questions are about these consequences.
70..
Has your relative/friend with mental health problems any children Unci, step/foster/
adoptedadopted children)9
no
yes,
71..
(PROCEED TO QUESTION 81]
(number of) children.
Has your relative/friend any children under the age of 16 years9
nn
no
(PROCEED TO QUESTION 811
yes<
(number of) children under
thee age of 16 years.
186 6
Appendixx II
HowHow often has it happened during the past four weeks that the child or children has/
have: have:
never r
often n
don't t
know w
72. .
ShownShown loss of appetite
DD
DD
DD
DD
73. .
BeenBeen sleepless at night
DD
DD
DD
DD
74. .
BeenBeen less attentive at school
DD
DD
DD
DD
75. .
ShownShown fear of father/mother
DD
DD
76. .
NotNot attended school
DD
DD
DD
DD
77. .
DisplayedDisplayed difficult behaviour
DD
DD
aa
78 8
PlayedPlayed less often with friends
DD
DD
DD
DD
79 9
FeltFelt ashamed of father/mother
DD
DD
aa
DD
80. .
HadHad to stay with neighbours, relatives orD
friends friends
DD
DD
81,,
The items listed in this questionnaire cannot of course, cover all your experiences. If
youyou would like to make any further comments, therefor, please feel free to write them in
thethe space below.
D
Comments: :
Itt is important for the purposes of this study that all the questions that apply to you
personally,, are answered. We would appreciate it, therefor, if you would carefully
checkk that no questions have been overlooked.
Pleasee accept our sincere thanks for your help and co-operation.
187 7
188 8